I awoke yesterday morning with the screeching headache and swirling vertigo that signal particular dissatisfaction in my sarcoidosis-inflamed cranial nerves.

I shepherded Andrew through the morning tasks of brushing his teeth, donning clean socks, and eating the breakfast burrito I made for him. After my friend Leah drove him to school, I thought about getting an early start on the day. I wanted to jump into the shower, find some clean socks myself, and get to work on my book. The only problem was that I couldn’t see straight, and the prospect of watching letters and words dance around and rearrange themselves before my eyes—as they do when I’m acutely feeling the impacts of the neurosarcoidosis—made me want to throw up.

So I wobbled up the stairs and went back to bed. The pain and nauseating sensation of ongoing motion kept me from falling back asleep. But I did start to feel better simply by making myself horizontal. I listened to Chris Bohjalian’s new book The Secrets of Eden on a low volume on my ipod. Kate the cat nestled next to me. It would have been a restful and lovely morning if I hadn’t started picking at myself—much like an adolescent who won’t leave her acne alone.

The problem with taking to my bed is that the experience reminds me too much of darker days almost two decades ago when I was seriously depressed. Back then, I would sometimes feel too hopeless to get out of bed. I would lurk in my room, unable to reach out to friends or go out into the world—even though I knew that talking to someone or forcing myself to go to class, my job, or the gym would make me feel better. Some days my will would get the better of my sadness, and I would propel myself up, into the shower, and out of the door. But more often than not, I was paralyzed in my despair. I would stay in bed for days, not even rising to shower or prepare food for myself.

This blog is not the place for the sordid details of my journey out of that depression. But one point is crucial: I learned to be mean to myself. Actually, that’s not quite right. I learned to be mean to myself in a more constructive way. Rather than remain pressed to the mattress by free-floating self-loathing, I somehow channeled that negativity into a useful inner voice—one I envision as a drill sergeant, complete with a megaphone. Instead of laying in bed thinking about how worthless, pathetic, and lousy I was, I let the drill sergeant bellow specific commands at me. “GET UP, get going! Come on, Stanfel. Don’t let the bastards get you down. Get up! NOW!!” The most important step—and the hardest one—was the first one. Once I had my feet on the ground, I had won a victory over despair. Out of bed—and then out of the house—I made it to school, ate regular meals, met friends. Ultimately, the simple (but not) process of sitting up and swinging my feet down to the floor saved my life—or, at least, made my life what it is today.

For the most part, I’ve managed my depression fairly well since those terrible days. Although I believe my “up and at ‘em” routine was what made the difference, I can’t prove that it wasn’t instead the countless hours in therapy, a couple of psychiatric hospitalizations, the cornucopia of anti-depressants that have been pushed on me over the years, positive relationships with people like Jay who have always cheered on my efforts to be alive, or simply the passage of time that brought me farther away from the traumatic events that pushed me into depression in the first place. At the very least, my self-taught cognitive-type therapy was certainly significant. I tackled my depression by first changing my depressive behavior—instead of getting lost in the tangle of gossamer threads that were my depressive thoughts.

My emphasis on getting up and keeping busy as a way to hold back whatever darkness remained (and I never wanted to test how much of that black void stayed with me) meant that I had a full and active life. Once I got those feet of mine out bed and then began walking, I didn’t look back. Would a psychiatrist find this behavior “healthy”? I don’t know. But I do know that with the bellicose voice of my drill sergeant in my ear, I made a career as a free-lance writer, was active in community organizations, traveled far, lived abroad, returned to competitive cycling, and gave birth to a beautiful boy.

Then I got sick.

At first, my chronic illness didn’t seem to threaten my mental hygiene. For the first two years I had sarcoidosis, my nervous system wasn’t involved. I grappled with heart problems, joint pain, and fatigue caused by the disease. But I kept going—even with an uncertain prognosis and threats of a heart attack. I certainly wasn’t jumping out of bed in the mornings, and I did more shuffling that running. But I was still out of bed more than I was in it, and I was still working—and even exercising a couple days a week.

But when the sarcoidosis moved into my nervous system in 2007, everything changed. I became (and remain) bedbound for weeks on end because my world is too swirly and vertiginous to be elsewhere. Although the cause was different, the feeling was all too familiar: the scummy film my skin gets from not showering, the specific twinge in my back from being supine for a long time, the greasy weight of my hair, the boredom that comes from not working—it all signals depression. I felt almost instantly transported back to the worst days of my depression of the early 1990s. It’s as if my memory of depression is housed in my body not my mind. It’s not just that this visceral reminder of the past colors my sense of what is taking place. It’s that I can’t tell whether I’m flat on my back because I’m sick with neurosarcoidosis or because I’m terribly depressed again.

“Get up. Get moving. Feet on the floor. You’ve got things to do, people to see, places to go. Come on Stanfel. Get up. UP,” the drill sergeant still bellows, as if my life depends on it. I sometimes try to follow his orders. I rise and totter about, shocked at how much my head hurts. Even though I’ve convinced myself I’ll feel better once I’m out of bed and trying to work, I don’t. The headache and the vertigo get worse. Only when the words I’m trying to read seem to lose their structural integrity and dissolve before reassembling themselves am I convinced once again that I’m sick. Back to bed I go. But a couple of hours later, I get slapped with the idea that I am succumbing to despair, and that if I let the process begin, I won’t be able to stop it from crashing over me and destroying me. On other days, I am too sick to even make that first effort to rise. After all these years of being heeded, the drill sergeant isn’t used to being disobeyed. So when I sigh to myself, “I just can’t,” to his calls to “GET UP” and ease my throbbing head back down onto the pillow, he takes umbrage at my disobedience and hurls abuse at me all day long.

It might seem that I’m missing the obvious point—that I am in fact depressed in the here and now, and with good reason. And I’m not disputing that. But the terror that grips me now when I can’t get out of bed is that I’ll get lost in the old despair of the early 1990s—not for the same reasons, but because the sensation of bed-bounded-ness is so familiar that I have no confidence that once I start down that emotional rabbit hole I will ever make it back out. If you’ve worked long and hard to shed some weight, over-eating at a single meal make can make it seem like all your progress is in jeopardy. For me, the connection between being physically confined to bed and the free-fall of my former deep despair is still visceral. I fear that despair, and the fact that I can’t run away from it when I’m shackled to the bed by illness. I worry about drowning in it, swamped by being sick with such a nebulous and life-threatening disease and all the changes to my life and to my relationships this has caused.

I know that this fear isn’t entirely logical. When I’m not bedbound, I’m not scared to think about these topics—after all, I write about them for the world to see. But we tame our personal histories by making a narrative of our lives. We assign causality to certain past events and choose to discard others. Yet when the bits we’ve left out of our creation stories reinsert themselves into our lives, even at wholly different places for wholly different reasons—like my current bedbound days, like a holiday food binge—we don’t always reinterpret them as cleanly as we’d like.

I don’t want to let this shard from my past make it so difficult for me to stay in bed when I am sick enough to need total rest. Friends have given me tapes or CDs of affirmations. I’ve listened to these. I’ve written my own affirmations to repeat to myself like mantras when I am feeling my worst about being bed-bound. I tell myself that I am not the same person as I was back then. I tell myself that I am not being weak, lazy, fat, or malingering by needing to lie down. Instead, I proclaim that I am strong and courageous, that I am taking care of myself, that I am making myself well. I remind myself that by feeling the sadness that naturally occurs with the loss I’ve experienced, I won’t succumb to the same depression of my past. So I write about this sadness, talk about it, lie with it next to me, and cry about it. Although I hate this sadness and want to banish it, I try to make space for it nevertheless. I feel its fangs and try not to think that it can devour me. “You are strong to stay where you need to be to get well and be safe,” I say to the empty room and the red-faced drill sergeant.

I truly believe the many positive things I tell myself. I do think that I am strong for taking care of myself. I do believe I am handling this illness as best I can. Still, I hate being unable to be busy in the world. My mood can sink very low when I’m hospitalized, or when the disease flares-up and I am confined to bed for several days at home. Well, of course, I tell myself. Who isn’t depressed by being confined to a hospital bed? Who isn’t saddened by chronic pain and vertigo, and now by spells of sightlessness? I’d be insane if I weren’t sad. What matters is that I don’t linger in this slough of despond. I start kicking and swimming as hard as I can, as soon as I am able, back to the surface. I am proud of myself for this.

There’s a catch, though—those words as soon as I am able. Yes, once I can start living a little, I feel better. Once I am able to write some, cook dinner for my family, visit with friends, watch a little television with Jay, and put Andrew to bed, I feel much less gloomy. Look at my recent spate of writing on this blog. I have been posting almost every day. I am proud of that. Writing injects energy into the rest of my life. Playing with Andrew does the same. Being somewhat active in my own life makes everything different and better. The drill sergeant is less huffy, and I am happier.

But I am only able to do these things because I am able, because I am feeling better—a lot better—than during the awful neurosarcoidosis flare-up last month, because I can get out of bed. Despite the two decades that have passed, despite my affirmations, despite an on-going dialogue with myself about my innate worthiness as a human being, despite taking anti-depressants, despite working now with a very good therapist, I still need to get out of bed and be a little busy not to feel disproportionately, overwhelmingly, frightened and sad. Get my feet on the floor and be “up and at ‘em”—even if it’s just for an hour or two—and I’m OK. Stay in bed all day—or the vast majority of the day—and I immediately feel like I’m suffocating on the same depression that devastated me long ago.

To me, this is the dark side of the valuable precept of “acting the way I want to feel,” as Gretchen Rubin wrote in her book, The Happiness Project. Acting the way I want to feel works for me. But sometimes, I am physically unable to act, and then I am in a bind because I can’t seem to counteract the feelings of disproportionate hopelessness that quickly well to the surface without a prior corollary activity. I can’t feel like I am a good mother without spending time reading to Andrew, standing outside while he rides his bicycle, playing piano with him, practicing writing with him, or baking with him. I can’t feel like an equal partner in my marriage unless I am working and doing my share (or at least some of) of the housework, cooking, and childcare. In brief, I can’t feel like a functional human being unless I am functional. My feelings seem inextricably to follow the lead of my behavior.

And I don’t think I’m alone in this. Is it really possible to have self-esteem without doing anything? I know that I am a touch more goal-oriented than other people might be. (I can hear a few of laughing at my use of “a touch.”) OK, OK, I ‘fess up. I have to work really hard not to have my self-worth dependent on writing a best-seller and then on winning the Pulitzer Prize in literature, having 13 percent body fat, maintaining a home that looks ready for a photo-shoot in House and Garden, parenting a perfectly-adjusted child who is brilliant and athletic, having a marriage that never involves a quarrel, being a dutiful and kind daughter and sister in both my family and Jay’s, and being an extraordinary friend by keeping in frequent touch, remembering birthdays, and hosting gatherings. I could go on for several pages like this, cataloging my unreasonable expectations for myself. But, at least I now recognize how laughably absurd my inner achiever can be. While I sometimes catch myself being mean to myself for not living up to my old standards, I have made great strides in lightening up and appreciating the things I can do. So, when I question whether it’s possible to be happy—or at least, not depressed—when I’m stuck in bed and can’t act the way I want to feel, my notion of action isn’t akin to the old unreasonable expectations. What I’m referring to are pretty basic activities—writing for an hour; meeting a friend once a month for coffee; putting Andrew to bed every other night; watching one episode of Medium with Jay; talking on the phone with my good friend Amy once a week; being able to attend Andrew’s kindergarten play; having a small birthday party for my Dad’s 70th.

So where does all this pondering lead? Can I fight off the bad blues when I am bedbound? If I am stuck in bed with neurological problems am I inevitably going to feel like I’ve traveled back in time and become my old depressed self again? Is there a way for me to step outside my now-familiar blues-busting system of heeding the drill sergeant’s call and doing something when doing something is in fact counterproductive and leads me to being stuck in bed for longer? I’ve proved I can change my ways. I stopped waiting to feel happier to get me out of bed, and got out of bed as a way to feel happier. Maybe now I can discover how to be happy when I must go back to bed.

By working out a new “system,” I am admitting to myself that being laid low by vision loss, chronic pain, and vertigo might continue. It’s a sobering thought. I’d rather go do something than contemplate a future that might involve me spending big chunks of time in bed. And I don’t have any brilliant ideas for not feeling depressed when the neurosarcoidosis gets nasty or for not having my current sadness resonate acutely of the past. I’m inclined instead to live as much and as fully as I can during this time when I’m feeling a little better. Even wondering about possible future relapses is depressing. And I can’t help slipping into magical thinking; like a little kid, I feel as though everything will be fine as long as I don’t let any of the worrisome thoughts come to the forefront.

But I don’t want to lurch from crisis to crisis—frantically and almost manically doing as much as I can without thinking about my emotions when my health allows, and then wallowing when the inevitable relapse occurs and then all those repressed thoughts threaten to consume me. It’s always good to have a plan, right? Having smoke detectors and an emergency plan doesn’t mean our house will go up in flames. (Right?) Mulling over what I’ll do if I relapse won’t make me sicker. So…probably the one thing I can do if I become bedbound again is deliberately not to isolate myself. It’s tough to chat on the phone when I’m in a lot of pain; it’s even harder when I’m really depressed. When the going gets tough, my tendency is to hunker down and wait it out—alone. I even keep my distance (emotionally) from Jay when I’m quite ill. Of course that just makes me feel worse. Instead of being sick, I make myself be sick and alone. It will be hard to pick up the phone when a friend, my Mom, or even Jay calls. What if I give the drill sergeant a new script? Is it possible to have him shriek, “Pick up the phone. Get the phone, Stanfel. Now. Now. Hands on the receiver. Now!” instead of his usual get-out-of-bed routine? I think it is. And I think it’s likely that rethinking communication as an action, rather than just another chore, might make the days when I’m unable to get up and out into the world less lonely. With the support of friends and family—and with their ideas of how to make it through the dark time—I might not feel like I’m back in 1990 and can’t go on living.

They key to surviving the bleakest days in Chronic Town is in re-framing how I think about a challenge. If I insist on sticking to how I used to live—even by clinging to a way of thinking—I’m going to keep feeling lost. Finding a way to feel better when I’m stuck in bed does mean accepting the profound changes sarcoidosis has brought to my life. But this strategizing doesn’t mean I’m giving up or giving in to the disease. Quite the contrary, I’m finding new ways of fighting sarcoidosis.

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2 Comments

Wow, this is a hugely powerful post. I really admire your emotional strength and I think reframing is exactly what will help.

I’ve spent a long time bedridden because of a not-very-diagnosed illness, although I’m improving a little now. I have a google alert for the word “bedridden” which is why your post popped up for me.

I don’t know anything about neurosarcoidosis, so this might be an entirely inappropriate suggestion, but could you set up your computer so you can use it lying in bed? I’m not sure if your vision problems are less severe lying down which would let you use the computer, or if possibly you could learn to use a screen reader so you could use the computer without looking at the screen. These may be completely inappropriate suggestions, feel free to ignore them! But having my computer available while I’m horizontal is the only thing that’s kept me sane!

… well, that and the telephone 🙂

And I spend an insanely large amount of time listening to audiobooks, so I very much understand that particular passion. It’s the lowest-energy thing I can do, if I’m too sick for audiobooks it’s time for eyemask + earplugs + try to sleep and that really gets boring fast as I’m sure you know!

I have a website for people who are bedridden or homebound, I’m leaving a link in the link section in case you’re interested in looking. May I add your blog to the list of bedridden/homebound bloggers?

Rebecca Stanfelsaid,

I am really glad you liked my post, and I’m delighted you found my blog. I am about to go explore yours right after I finish typing this. I’d be honored to be added to your list of homebound bloggers. I would like to do the same and add your blog to my soon-to-be blogroll of likeminded and helpful blogs and sites. I really want to spend some time, compile a good blogroll list, and become linked with these sites. My goal is to have this done in the next couple of weeks. I put a lot of time into writing for Chronic Time. Now I want to devote some energy into entering the “community” of health bloggers. If you have any advice or any tips on how to do this, I’d be very appreciative.

The screen reader is an intriguing idea. I’ve never tried this before, but I am definitely open to new ideas. The last setback and hospitalization was especially depressing–because I couldn’t write or even check my e-mail. Have you used a screen reader? Any specific type you’d recommend?